Friday, July 28, 2017

Hilton Head Family Vacation

I don't even know where to start! If what happened last night hadn't happened, I'd probably have titled this post Hilton Hell Family "Vacation" instead of the more prosaic Hilton Head Family Vacation. Because of last night's vote by the Senate to NOT repeal the Affordable Care Act, and because I only found out about it this morning when I woke up in Los Angeles, (much to my shock because when I went to bed it looked like it was going to be the opposite, and I did go to bed filled with anxiety and dread, much like I've gone to bed for the last six months), I would have had a harder time getting on the old blog not sounding bitter and angry. As long-time readers of the old blog know, there is some pretty hard-core partisanship in my immediate family, and things can get very testy. I have a mother who is half Syrian and a father who is full Italian. Let's just say that the three daughters are opinionated, our progeny vocal and we're all -- well -- passionate.

It's a beautiful house, but it's not big and all of us stay there. It's tight and it's raucous.

Long-time readers of the old blog know that every year my extended family meets for a week or so at my parents' home on Hilton Head Island. We've been doing this for over eighteen years, and the kids adore the experience. My experience is, let's say, less joyful, but that's because for the first decade or so I brought Sophie along and have a bit of PTSD, I think (if I were an atheist, I would have become one during "vacation" on Hilton Head Island with Sophie), as well as this aching feeling that she will never truly be a part of these kids' lives or memories. That's a big, complicated feeling that those of you in similar circumstances will probably understand better than those of you who might have the fleeting (and somewhat accurate) thought that I need some gratitude or awareness of my privilege or -- well -- whatever.

The Progeny

The kids are all getting so big, and despite the geographical distances between us (Los Angeles, New York, St. Louis and Washington, D.C.), with social media and this annual get-together, the cousins remain remarkably close and are a joy to watch. Not only are they all, literally, beautiful, but they're also a kind and very funny bunch. We had many a laugh, particularly one night when we each used our Bitmoji characters and texted one another from the same room, with one text more clever than the next, all of us laughing so hard that we cried.

O.K., I cried.

I'm really proud to say that most believe my Bitmoji to look exactly like me:

Where was I?

The Big O with his drone

Genes are mighty strong

Family meals

The best-looking incoming freshmen in any university anywhere

My amazing 81 year old father with Henry

Beautiful Atlantic ocean

We're a big crowd on the beach (and those giant houses behind are not ours)

My sexy, adorable sister who fights in her home state for safer gun laws. You don't want to mess with her.

Look closely at what's in the lagoon right behind my parents' house. Scroll down for details.

I love this picture of me and my father.

What I wore in lieu of actually screaming at every single person I saw in South Carolina that I suspected of being a Trumper

I showed them, right?

Ha. Just kidding. I felt desperate sitting out there on the hot beach, under a tent, watching our beautiful children play volleyball. I felt angry and nervous and anxious all afternoon on Tuesday, and when I checked my email and saw that the Senate was taking up the debate, that McCain had voted yes, I stood up and stormed off the beach and back to my room where I sat for the next hour, furiously dialing people through my Indivisible resistance app, speaking to constituents in West Virginia and Nevada. One 83 year old woman told me that she'd called Senator Capito every day for weeks, but she didn't think her voice mattered. I asked her to please call again, that her voice did matter. I hope it matters, I said. The calling helped me to feel sane and productive and less anxious, but can I tell you something? This whole thing has made me, generally not an anxious person, a very anxious person, often filled with dread and -- yes -- anger. The thing is that it's not only about me, about Sophie -- it's about so many of the people I've met over the last couple of decades and what I've learned about community and disability and vulnerable people. It's existential.

My beloved sons and I in the best light of the day

In the lagoon behind my parents' house

It was also Henry's 19th birthday, so we celebrated by going to a Mexican restaurant.

I won't show you the picture that my brother-in-law took of the my sistahs and I shooting birds into the camera. As Mary said when I showed her, I'd party with ya'll.
Speaking of Mary, I hope you wish her a happy birthday because today's her birthday and I love her to pieces.

What else?

I arrived back on the left coast and walked down the baggage claim and out into the not-humid Los Angeles air and to my love.

Waking up this morning to the good news -- well -- it was awesome. I know we'll still have to fight, but I'm ready and willing. The relief that I don't have to worry that Sophie's health insurance will be ripped away or her access to MediCal messed with, at least for now, is indescribable. The Turtle put his head back in the shell, 45 is still tweeting insanities, and we've got a dude in charge of 45's communication who seems like he stepped out of the show Entourage. There's a lot going on, right?

13 comments:

The holiday looks lovely and I get sad too when I see how Katie doesn't fit in. And McCain, he did a good thing. Perhaps dying has given him a new perspective. It does help one to focus on what is actually important.

I'm Green with envy at your fab Vacay with extended Family and at The Beach... we had to cancel ours that was spozed to be at The Beach West Coast on account of The Man having too much Anxiety about the Trip... oh well. I just couldn't muster the courage to take this Show on the Road... the only thing worse than NOT having a Vacay is having the one from Hell, right?! *Winks* Now I can Live vicariously thru your Images Shared of The Beach East Coast. And Wow, Alligator in the Pond and he looks like a humdinger sized one, Yikes!!! Yes, I too breathed a Sigh of Relief that the skinny bill got shot down and tho' I don't usually like or agree with our Senator McCain, I was proud of him for doing the right thing by the People and his State rather than putting Party first... I know they tried to strong arm him into voting for it, but everyone agreed it was a Bad Bill, just some assholes still voted for Party rather than Country, Shame on them! I too was concerned that The G-Kid Force's Insurance would be stripped away and with both of them having Chronic Disability and Illness, we'd have NO Insurance for them since The Man's Insurance will not pick them up since he was not allowed to Adopt them due to the extent of his Disability... so complicated, so stupid... so nerve racking! Long battle ahead of coarse, but Resistance is Key...

The family vacation is a wonderful tradition. The cousins are all beautiful. I'm glad Henry and Oliver have those bonds. I'm sorry Sophie doesn't, though she has their love. I understand the ache you feel. It is a mother's lament. How torn you must feel. Thank god for another false start on the repeal front. All the calls are having an effect I think. I believe McCain's role was to make sure it failed.

To me, it is not a small miracle that y'all all get together and live in one space for that amount of time with no physical damage done. Nope. Not a small miracle at all. A rather large one. The gene pool that you are all swimming in is surely a gorgeous one. I mean- good god. How can so many good-looking people all exist in one family? Oh wait. Rosemarie's family...I guess it's possible. Your very own alligator! How lucky! And thank you for the sweet shout-out. I love you to pieces too. And yes, I would party all night long with you and your sisters. Or maybe until ten o'clock.

Wow, what a post! Glad your trip went well and the differences of political opinion weren't too overwhelming. Everybody is looking great in your photos -- I particularly love that picture of you on the couch with Oliver and Henry. The light is fantastic. I'm so relieved the vote went the way it did, though of course the battle continues because Trump and the vast majority of the Repubs will do whatever they can to muck up the ACA. One of Dave's aunts posted something on Facebook in support of Trump withholding money in an attempt to sink it, and HER OWN DAUGHTER posted a comment saying, "But Mom, then I'll lose my health insurance!" I just wonder what the heck people are thinking sometimes.

Beautiful pictures! I have been reading for awhile and find this blog unusually quiet about a subject that has been plastered across the news for weeks and weeks. Not a single mention of baby Charlie. I remember a few posts back where it was said that Socialism wasn't just for Europe anymore. The idea of the government paying for our healthcare can perhaps lead us into heady thoughts of relief, calm and a sense security. Be careful for what you wish for. Those poor parents had no say so in their own childs treatment. It didn't matter that the experimental treatment might not have worked. they should have had the choice. As parents of disabled children I would think that the idea of the government telling you what you can and cannot do for your child would make your blood run cold.

Thanks, Anonymous (sigh, Anonymous, why Anonymous). I've been doing a lot of thinking about the case you're referring to -- just haven't mustered the energy to write about it. I appreciate the challenge, but I don't think it has much to do with socialized healthcare, so "be careful what you wish for" is a bit disingenuous. There have been countless incidents in medical ethics and law here in our capitalistic-happy country that are equally as anguished and shocking. I'd say that the issues of abortion and euthanasia are two -- and it's my belief that these things are quite literally impossible to legislate. I personally believe that the parents should have the final say on the fate of their child, but I'm exquisitely aware of all the nuances involved -- the false hopes put out by docs, the culture of western medicine, the incredible aversion to disability, the projection of suffering or who gets to decide what constitutes suffering, etc. And the government already DOES legislate what I can and can't do for my child -- it has nothing o do with socialism.

Dear Anonymous, baby Charlie was born with a genetic disease that was incompatible with life. As a nurse I don't think it's fair or even ethical to experiment on infants as they cannot give consent. And the parents were clutching at straws because their baby was dying. It had nothing to do with socialized medicine.

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The Mermaid

I love poetry and discourse and gallows humor. I like to say that reading voraciously has been the only constant in my life. I am a fierce advocate for my daughter who has a severe seizure disorder of unknown origin, as well as for all special needs children. This is a place where poetry, politics, parenting, and disability intersect. Every now and then I curse and might offend you with my leftist politics. No apologies. Stop reading.
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